The backdrop to my story will hopefully answer some of the questions that come up, when being thrust into the new role of being a caregiver. Remember, care giving does not come with instructions. You’re kind of on your own. Everybody will be telling you what to do, with expectations. Don’t sweat it. It’s happened to all of us.
Although I’m talking about a journey through Annie’s cancer, make no mistake, a lot of this article could apply to different diseases and terminal illnesses. Some things can’t be separated.
Many of us enter the world of being a caregiver without any knowledge or concept of what we’re getting into. We’re simply caregivers in training. It can be very complicated, and will offer up challenges that can drive our emotions to a level that we’ve not seen before. Anger, frustration, trying to and understanding the loved ones needs, are all a part of the initial processing of information and emotions, and quite normal. Sometimes, I felt like I was driving in my car at a high rate of speed and slowly losing control of the vehicle. Instinctively, I knew if I didn’t fight back to regain control, I was going to crash–Welcome, “To The World Of Care Giving.”
It was an honor and a privilege to take care of my wife Annie during her last thirty months on this little patch of the universe, we call earth. But it wasn’t easy. Being a caregiver for a loved one can be one of the most rewarding things we will ever do, but at the same time it can be one of the most challenging and difficult too.
Emotions continually ebb and flow, bringing little clarity, but more complexity to care giving. In my case, care giving meant being locked in an, at times, insane world 24/7 with little chance of escaping.
Truth is, I personally didn’t want to escape. I wanted to have a running battle with the cancer, giving Annie one more day if I could, with a renewed hope for tomorrow. Please remember, sometimes all a terminally ill patient has left is faith, hope, and love. Love being the greatest. When all else fails, the greatest gift we can give our terminally ill loved one, is love.
Being a person that didn’t have a clue what being a caregiver was all about, while being thrust into the world of cancer with no concept of what the disease stood for, was very tough. Of course, I was familiar with the term, Mr. Somebody, recently passed from cancer. But think about this…What does that really mean to a newbie caregiver. It means you understand the concept that cancer can be deadly, but not how it works. And just to be fair, for a newbie caregiver it could be any form of serious to terminal illness, long or short term care required. Many of the functions, regardless of the illness are going to be the same.
As caregivers, we often become the patient’s window, or eyes and ears, to the world. Without us, for many, the suffering would be great.
In order to demand the best care for your loved one, you have to lead by example. You’ll probably be clumsy at first, make some mistakes, but no caregiver should ever be criticized for trying to do their best and making mistakes in the process. Keep reminding yourself, you’re doing a job that most people won’t. If you’re being criticized for doing your best, ask them to take your place. They won’t!
Being proactive in your loved ones care, is paramount to their well-being. If you know what you’re talking about, think you know, or maybe you know, and you see a perceived problem, don’t remain silent, bring whatever it is to the appropriate persons attention. Your silence could potentially lead to serious complications. Yes, you might be a pain in the butt at times, but perhaps that’s better than the consequences of not speaking up.
I’m going to help you by breaking down a few areas that really troubled me and perhaps help you avoid some of the many caregiver traps.
Once the preliminary testing and biopsy had been done, Annie and I were advised that we’d get a call to come back to the cancer center when, the results were in.
Three days later I received a call to bring her back, that day. When we got there and taken back to the patient room, I found out rather quickly I was not prepared, psychologically, emotionally, or with a method to take notes on the visit.
Here’s what I didn’t understand and where I got it wrong. When Annie was given a death sentence, instead of lovingly caring for her, I sort of melted down with her. And that may be normal, but not recognizing that her life was spiraling out of control, was a missed opportunity to better console her. If I had it to do over again, I would have sucked in a bunch of air, put my arms around her and loved her through the wretched diagnosis. No spoken words could make things right for her. She was dying, her prognosis was very grim. I was told privately, she had maybe 3 or 4 weeks to live.
Without taking any notes, when we got home there was more questions than answers. Of course, I made the phone call to the cancer center and got what I needed to know, but that was after the fact. I knew I had to do better.
From that point on, I made it a point to pay attention to every spoken word and if I had a question, I’d ask it. I took mental notes of the conversations, got copies of all the blood tests or other tests conducted on each visit, before we left the appointment. It’s wasn’t difficult once I got through her initial appointment. Still, it would be wise to carry a notebook with you to all appointments, and a good place to keep scheduled appointments.
The reason blood test reports are so important, is that they contain a wealth of information. If you’re dealing with cancer, especially blood cancer, and you lay the results of several tests out, in the order they were taken, and start comparing the numbers from each test, you’ll know if there is any improvement going on at the time, or not. It can be psychologically and emotionally important to you and the loved one too.
In the beginning for the first few months, Annie was losing a little more ground every day. But slowly and surely over time, I could see a little bump in the numbers, with indicated some stability in the blood counts. I wasn’t simply looking at red or white blood cells–included in the report are many other life sustaining factors such as nutritional levels, potassium, magnesium and so on. So always get the report if you can, and compare it with future reports. (it’s kind of a big deal, it really is.)
When you arrive with your loved one for the diagnosis, make sure you have an idea of what healthcare coverage your loved one has. One of the first things said to me after the diagnosis and a few spoken words from the oncologist was, Bob, let’s take a walk down the hallway and see what sort of insurance coverage you have. I immediately had, what felt like, was a short panic attack, as I had no idea of what our insurance would cover in the very expensive world of cancer.
Sadly, the level of care and treatment your loved one will get is determined by your insurance coverage. For example, if you need the best chemotherapy available, the so called silver bullet, which will usually be much more expensive then the lesser chemotherapy that might get a response to the disease, depending on your coverage the insurance company initially makes the choice on which drug they will approve. If due to your coverage the insurance company elects to approve a lesser version of the silver bullet, they’ll try it for a short time and look for a response from the cancer. If it don’t work, they’ll give the oncologist permission to move up to the next chemotherapy on the ladder, or they won’t. He’ll certainly seek approval to move up to the next drug. And sometimes, as Annie’s oncologist said, by the time a patient gets what they need, it’s too late to save them. (Always question the oncologist on how he expects the cancer to respond to the particular drug being given to your loved one, and is it the best available.)
After checking our coverage, Annie’s oncologist sat me down and thanked me for my 24 years of service in the military, and with a sigh, told me he wished everyone had coverage like Annie, as he could help so many more people. It was imperative that Annie have the silver bullet, and she, was covered for it.
Anytime a loved one is going in for a diagnosis or potential diagnosis, make sure someone is with them. Annie’s visit and diagnosis would have been very difficult for her on many levels, had I not been there. She was trying to come to terms with all the emotions that were filtering throughout her body, and answering questions about our insurance coverage would have been very difficult for her. And, had she not been able to answer the questions on insurance, treatment strategy would be useless. Treatment usually, perhaps always, works off insurance approval.
Clinical trials have been around a long time. But not many folks know about them. I certainly didn’t. And sometimes, especially with cancer patients, depending on the cancer, the clinical trials may offer the best chance of survival. Of course, that’s due to new experimental drugs and therapies not yet on the market.
When you get a cancer diagnosis make sure you ask if there are any clinical trials going on for your particular cancer. In Annie’s case, her oncologist called a nurse into the room that handled the clinical trials. Annie met the requirements, but the clinical trials for the chemotherapy she needed had shut down for two weeks for medication adjustment–And the oncologist said, I don’t have two weeks, I don’t even have two days. He needed to start chemotherapy immediately, which would disqualify her for the clinical trials at the time. And it did. However, with our insurance coverage she was able to get the new drug anyway. If you can get on the clinical trials you will likely get the best medication with little out of pocket expense. That’s an important fact to remember.
Also, there are many different diseases besides cancer that have clinical trials, and some are to do with medical devices. So make sure you ask the doctor about the clinical trials if you’re facing a particularly bad disease, especially if you don’t have great insurance coverage. And don’t wait until treatment starts as that may disqualify the patient or loved one.
There are also clinical trials now for some cancer’s that have regressed, and for cancer that is not responding to treatment. If you don’t ask, you might not know that, you had a chance to help save, or certainly prolong the life of a loved one.
Mutual respect–doctor versus caregiver
In the beginning, sometimes I’d tell a person who the oncologist was that Annie would be seeing and they’d say, I’m sorry. It appeared Annie’s oncologist had no bedside manners.
I spent 24 years in the military, traveled two and fro, met people everywhere, and in the end I’d have to say, Annie’s oncologist, the late Dr. Moore Sr., was one of the greatest men I’ve ever known.
Yes, he barked at some nurses and her caregiver, me, at times, but he always had Annie’s best interest in mind, and treated her with dignity and respect. As for his bedside manners towards her, impeccable.
Dr. Moore Sr. didn’t just give you his respect, you had to earn it. Why? Simply put, there was often a life on the line. He didn’t like losing patients to cancer. And being fair, the caregiver, the nurse, and the oncologist had to be in sync to get the best possible outcome for Annie or any patient. And when we didn’t hold up our end, we heard about it.
I took many tough blows (words) to the chin, but I never fell down, I listened and I learned everything I could about the disease. In a few short months he could ask me anything about the disease and I had an answer. My answer may not have always been right, but he saw the progress, and over time we could have an educated conversation about her cancer. And he knew, when his patient was out of his control, I took great care of Annie and had his back too. You see, I wanted her to live too.
As a caregiver, if you pay attention, don’t cop an attitude, take care of your loved one or patient in a meaningful way, you’ll earn and get the respect you deserve. An oncologist or perhaps a doctor can work wonders in an office, but if the weak link in the chain is at home with the caregiver, then the wheels will start spinning in place and perhaps fall off. Progress will not be made, and in fact, may reverse itself.
Strong Support System
You’ll learn rather quickly that you need some sort of help. Annie’s care was, for the most part 24/7. Yes, I could tuck her tightly in her hospital bed in the middle of our living room while I raced over to get some staple food or run a quick errand, but sometimes one can’t do that. Our daughter helped me when needed, and if she was not available I had a neighbor that would sit with Annie.
I do know, when you are a caregiver folks just seem to disappear. Still, you must try to build a support system by engaging in conversation with them and soliciting their help, if only for a short time, once in awhile. Do this before they disappear, and if you can’t, won’t, or don’t, caregiver duties may wear you out rather quickly. Caregiver burnout is not a good place to be.
The first two months I lost 18 pounds. But I muddled through, and in the end used whatever help I could get. However, I didn’t need or want much help as I went ahead and closed our two small businesses down after the diagnosis to give her my undivided attention. Financially it was tough, but you can only do what you can do. Losing financial stability is simply the casualty of a terminal illness.
The minute I heard Annie’s prognosis, I started grieving her loss. It may not happen to you until later on in the illness, if it happens at all. But here’s the thing, if you are grieving, try not to grieve around your loved one. It’s a given that, if you are suffering from Anticipatory grief, your loved one will probably be grieving their own mortality. Try to keep your emotional state in check if you can. I lost it with Annie, one time. Cried like a baby sitting at the dining room table with her. Of course, it worried her, she was depending on me to be strong and help her fight the battle. My sign of weakness whether warranted or not, was not a good idea. I learned to take it outside. I had a plastic blue baseball bat I used to smack a tree. And to my surprise it worked well. I came back in the house and continued on with my duties without all the pent up emotions.
Control the illness
If your loved one is suffering from a newly diagnosed terminal illness, at least in the beginning, it’s quite possible that the illness will occupy much of your mind, and you may feel a counterproductive hate for the illness. But while your fumbling around with more questions than answers, if you can get this one area right, you’ll save yourself a lot of chaos.
I had to learn to control the cancer and not let it control me. How do you do that? First, recognize that a big part of your struggles are centered around the disease. For example, while I’m walking around thinking, I hate cancer, I hate cancer, look what it’s done to Annie–in essence the cancer is having its way with me. My mind flows from one bad thought to another, to include my impending loss. Over time, I taught myself to steer my mind away from those thoughts by understanding, life is, what it is. I can’t change it, so why dwell on it. My position in Annie’s life was to love her and provide the best care for her I could. And I couldn’t do that while fighting a losing battle in my mind with the “beast of cancer.”
Eating, not a subject for an argument
Yes, I’d fix Annie a special meal that she’d asked me to cook, and when I brought it to her she’d nervously say, I don’t fancy it now. So I’d take it to the garbage and dump it. And of course, being human, I’d feel a bit put out. But we learn from our mistakes.
I spoke to Annie’s oncologist about the eating dilemma, and he said to feed her whatever she will eat, and at the same time, quit trying to create a perfect world around a dreadful situation. He said, under no circumstances was I to ever make eating the source of an argument. Why! Because cancer inherently puts off a multitude of chemicals that will affect ones appetite. One minute she may fancy something and the next minute, maybe not. So I developed a strategy through, going back to her old staple favorites. Fresh or frozen raspberries with vanilla ice cream, deep fried pancakes with mandarin oranges on top with syrup. Which between the two is about one-thousand calories, and half way to the 2,000 calories she needed daily. She also loved the drink, chocolate Boost. However, she would not drink it. She had me freeze it and she’d dig it out with the opposite end of a curved up metal handled spoon. Weird, I know. But she’d have two or three a day, and digging in that container occupied her time and mind. Those drinks had 250 calories each, some good nutrition, and protein. It worked really well.
What I’m saying is, be creative. If your loved one won’t eat anything but junk food, then do what I did, get out of the perfect world of nutrition and help them gain weight or at least not lose it. Remember, be a calorie counter. The goal is 2,000 calories a day minimum. Pneumonia and bed sores loves malnourished loved ones.
This might make you smile, and although it started out innocently, it turned into something special.
Annie was in the big chair, asleep at the treatment room getting chemotherapy. Her sleep was induced by high dose morphine, and although sluggish, as you will see, she was still with me.
I was sitting and observing her, when out of the corner of my eye, I saw the volunteer from Victory In The Valley come walking by with a big basket full of all sorts of snacks. She asked me if I wanted a snack. I said yes, and plucked out a nice bag of Cheetos. Now those are a really fat fueled, calorie filled snacks. After the first 2 or 3, I guess I was crunching, Annie reached her little hand out to me, palm up. I took my right hand and placed it in hers thinking she wanted to hold my hand for comfort or she was showing me affection. Not so! She shook my hand off, and with her eyes still closed, motioned with her hand for me to give her the bag of Cheetos. So I put the bag in her hand and she ate every single one of them. Amazing! I had never seen her eat junk food like that before.
What just happened? Well, it was time to get creative. A door to a huge opportunity just opened. After she stole my Cheetos, I knew I could probably get her to do it again. I’d go into the living room with a calorie filled snack, sit on the couch and watch her, watch me, as I snacked. Like clockwork she’d say, “Watcha-got.” From that point on, the snack was hers. My daughter did that with her, too. It could be so much fun caring for Annie at times. Never a dull moment.
Love, your loved one through their disease if you can. I know the difficulties and challenges presented in the care giving for a loved one with Alzheimer’s and Dementia. But, knowing is understanding and simply doing the best we can.
My position as Annie’s caregiver was not to bark orders at her, but to guide her as best I could, based on my understanding of what we were dealing with at the time.
I went out and visited my dad last year, not long before he died. I noticed he had the onset of dementia. He made me smile so much. Metaphor: I swear, instead of us both talking about Apples when we spoke I, might be talking about Apples and he’d be talking about Oranges.
It was okay. I knew what he meant. If your loved one gets confused, work with them, stay with them, because what’s going on in their mind is totally unknown and unimaginable to us. Dad always called me Bobby. I wondered, in his mind, was he thinking, Bobby, you don’t understand a word I’m saying, do you. I hope that wasn’t the case. I tried to understand.
My sleep solution
In the beginning, care giving for Annie wore me out. It was called 24/7 around the clock care. As many of you know, that isn’t always the case. Sometimes, at various points in Annie’s illness she would be so sick, it would require a few 35 hour shifts with little rest in between.
A nurse, noting how tired I was, wanted to know my sleep schedule. When I told her what was going on, she simply said–drop what you’re doing at the time if you can and learn to sleep when she sleeps. Once I developed a strategy, I started pushing her wheelchair up to the head of her hospital bed, placing her hand in mine so I’d know if she woke, then lay my head on the side of her bed and take a nap.
The nurse wasn’t a rocket scientist, but her words made me feel a bit like a dummy. And she was right. It worked very well for both Annie and I. A rested, alert caregiver, is more capable of carrying out their daily duties with quantity and quality.
Never assume anything
While in the military, seventeen years of which were during the cold war, we were taught as soldiers, never assume anything, always check it out. That phrase served many soldiers well.
Enter the world of care giving. An invalid assumption can cost the life of a loved one or patient. It happens all the time. (A recent New York Times article stated that medical mistakes are the third leading cause of deaths in this country, behind Heart disease and Lung cancer.) For example, the words, “I assumed she’d be okay until the doctor made the rounds in the morning,” are spoken all to often. Sometimes, that’s not the case.
During Annie’s 30 month cancer journey, she spent 100+ days in the hospital. I stayed with her 24/7 unless I had an appointment, and then I got someone else to stay with her for that short time. I always slept in a recliner near the foot of her bed every night, at an angle where I could see her face.
One morning around 2 A.M., I was just settling down in the recliner. Not long after, I heard Annie start breathing in very short, rapid bursts. (This was midway through her disease and almost everything that happened, had happened before. I was educated.) I knew immediately something was wrong. I got off the recliner and walked over to her. The first thing I did was to gently turn her head to the right and check the vein on her neck. It was pronounced and protruding out. Then I squatted down under her bed and checked the catheter bag…It was empty. I immediately called the nurse to our room. When she arrived, I told her Annie was on fluid overload, and that she needed some immediate intervention via a diuretic to force the fluid out. Then I explained to her how I knew Annie was in trouble. Which was, rapid breathing, the catheter bag, and the protruding vein in her neck.
She said, Bob I can’t wake the doctor at two in the morning and tell her you think Annie is on fluid overload. She’ll be making rounds in the morning, we’ll wait until then.
I refused to take no for an answer. Which would have been assuming she’d make it until the doctor showed up.
I told the nurse it appeared Annie was drowning in her own fluids. And in the past they used Lasix to get the fluid out. Once she knew I’d been there and done that a couple times before, she ran down and called the doctor. When she came back, she gave Annie an injection of Lasix, and I got to spend the next few hours dumping the fluid out of her catheter bag, and writing the amount on a sheet of paper (chart) in the bathroom.
Annie was back to normal in a couple of ours, and I certainly didn’t mind dumping the bag.
Had I assumed Annie was going to be okay, I’d probably lost her in the night. I knew what her problem was, and when I said it appeared that Annie was drowning in her own fluid, that was the term her oncologist used when he paid us a surprise visit months earlier, and I was sitting by her bed while she was on fluid overload. Reason being, she was getting fluids, they were being urinated into the catheter bag, which was full and backing up into the body. That is an emergency.
This all lead to an intense chat with the charge nurse and me, over the catheter bag. That was around the third month of Annie’s cancer and from that point on, I was always in charge of the catheter bag.
During that event, Annie’s cardiologist, Dr. Farhat, came over and examined her and started treatment with Lasix to remove the fluids. He also taught me how to identify fluid overload.
A caregiver getting educated on the disease and it’s side effects is an invaluable tool in times of crisis.
Approximately 2 days later, the CNA came in, again around 2 A.M., and checked Annie’s blood pressure. It was like 65/39, very low. So I immediately looked in Annie’s mouth, it was very dry, and when I checked her Catheter bag it was empty, despite the fact that she was getting Iv fluids. I told the CNA that Annie was dehydrated and needed some help. I needed to see the nurse right away. It was the same nurse as before, and we had much of the same discussion as before. But she called the doctor, and the next thing I saw was her running down the hallway with a 500cc bag of fluid to be bolus fed–that’s rapid feeding. Within an hour or less, urine was flowing into the catheter bag, her blood pressure was coming up, and life was coming back into balance. And, I had another long night and partial day keeping up with the catheter bag.
I learned through care giving for Annie, not to concern myself so much with what was causing a problem, but rather, identify a symptom and get help. If you identify a problem, it’s the doctor’s job to figure out why it happened. And there very good at that. With seriously ill cancer patients, things can go downhill very rapidly. But as a caregiver, if you watch and learn, through your past experience you’ll be able to see a symptom, and get intervention, as did I.
If I had of been a caregiver for anyone other than Annie, or a close loved one, I could not give them what I gave her. Why! Because love is a powerful force to be reckoned with, and we all know it can make us crazy at times. But, it allows us to push on and on beyond our own and the expectations of others. The word quit, is not in our vocabulary. I’d sit for ages, stroking Annie’s hair and whispering words of love to her. And that’s what love’s about.
However, I would do the best I possibly could for any patient. I’d see things the same, but with less emotion and obvious personal intimate contact.
Caregiver bottom line
Try to keep things like medication, bed baths, food, and so on, on schedule. In other words, if you set up a schedule and stick to it, you will avoid a lot of chaos, and be able to provide better care. I know that it’s not easy, but for the well-being of you and your loved one, you need to try.
I wish you the best.
(Lead in picture-Annie, Melissa and me)